Re: Re: 48hrs to infertility

[Guest guest]

Hey There,

Thanks so much for your mail, I really appreciate your honesty, and for sharing so much with us.

I'll be thinking of you, best wishes!

Kildare, Ireland

blepharophimosis Re: 48hrs to infertility

Hi again,Thanks to everyone for their interesting responses. A few clarifications on my earlier email:1) I had a great childhood growing up with BPES. I was a bright,loved child who thrived and had every advantage. I don't want toscare the young parents who emailed me about their daughters intothinking that it's an awful thing. As I said in my first email, BPESenhanced my life more than it hindered it. Having something that mademe different ultimately made me stronger and more self reliant. Withthat said, and I am speaking from my own experience, it was very hardto be a teenager and look different. I was teased, I had low selfesteem for a long time, and it was a long time before I was able to beconfident enough to start dating. High school was very difficult forme socially and I really think it was because I had very low selfesteem. I think it's important to be honest about these feelings sothat we

can find a way to help young people with this issue.2) Thanks for the encouraging words from women who were able to getpregnant despite having Type 1. I should clarify my earlier postingjust to say that I am mostly upset (despite being a pediatrician! )that I wasn't informed earlier of the urgency to get pregnant. I amnow 31 and if I now have POF, I will regret not getting pregnantearlier (I have been with my husband since we were 21). Mostly I amupset at myself for not doing more research myself. Though my doctorsnever told me, that's not their fault. I should have done my ownresearch. 3) Someone asked a specific question about the genetic test. I am notsure where to get it (there are many posts about this in earlieremails), but you can ask your genetics doctor for information on theFOXL2 test. Since I have not had it myself, I don't know where toobtain it. Perhaps others can help?4) As for the

ethical decision regarding knowingly having a childwith a genetic disease, I can see every side of the multiple emails Ihave received. As a pediatrician, I have certainly seen hundreds ofchildren with much more severe conditions than BPES. Of course it isnot an awful thing to have it! Let's face it - I have thrived mostlybecause I was 'different' and likely became a doctor because of myBPES. But, then there is the emotional side of knowingly passing onsomething that will make your child's life harder in some way. Basically, what I was saying in my email is that if I have POF andcan't get pregnant I will be relieved that I don't have to make thatdecision. That's all.Thanks for all your supportive emails! No results yet, but they willlikely be back in the next couple of days.CBJ

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Hey There,

Thanks so much for your mail, I really appreciate your honesty, and for sharing so much with us.

I'll be thinking of you, best wishes!

Kildare, Ireland

blepharophimosis Re: 48hrs to infertility

Hi again,Thanks to everyone for their interesting responses. A few clarifications on my earlier email:1) I had a great childhood growing up with BPES. I was a bright,loved child who thrived and had every advantage. I don't want toscare the young parents who emailed me about their daughters intothinking that it's an awful thing. As I said in my first email, BPESenhanced my life more than it hindered it. Having something that mademe different ultimately made me stronger and more self reliant. Withthat said, and I am speaking from my own experience, it was very hardto be a teenager and look different. I was teased, I had low selfesteem for a long time, and it was a long time before I was able to beconfident enough to start dating. High school was very difficult forme socially and I really think it was because I had very low selfesteem. I think it's important to be honest about these feelings sothat we

can find a way to help young people with this issue.2) Thanks for the encouraging words from women who were able to getpregnant despite having Type 1. I should clarify my earlier postingjust to say that I am mostly upset (despite being a pediatrician! )that I wasn't informed earlier of the urgency to get pregnant. I amnow 31 and if I now have POF, I will regret not getting pregnantearlier (I have been with my husband since we were 21). Mostly I amupset at myself for not doing more research myself. Though my doctorsnever told me, that's not their fault. I should have done my ownresearch. 3) Someone asked a specific question about the genetic test. I am notsure where to get it (there are many posts about this in earlieremails), but you can ask your genetics doctor for information on theFOXL2 test. Since I have not had it myself, I don't know where toobtain it. Perhaps others can help?4) As for the

ethical decision regarding knowingly having a childwith a genetic disease, I can see every side of the multiple emails Ihave received. As a pediatrician, I have certainly seen hundreds ofchildren with much more severe conditions than BPES. Of course it isnot an awful thing to have it! Let's face it - I have thrived mostlybecause I was 'different' and likely became a doctor because of myBPES. But, then there is the emotional side of knowingly passing onsomething that will make your child's life harder in some way. Basically, what I was saying in my email is that if I have POF andcan't get pregnant I will be relieved that I don't have to make thatdecision. That's all.Thanks for all your supportive emails! No results yet, but they willlikely be back in the next couple of days.CBJ

Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Hi CBJ,

I am the father of a seven-years old girl with BPES, and although I don´t

think that BPES is an awful thing I am worried about her future. Your words

have helped me a lot, thank you very much

>From: " cberator " <cbspam@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis Re: 48hrs to infertility

>Date: Tue, 13 Feb 2007 17:40:03 -0000

>

>Hi again,

>

>Thanks to everyone for their interesting responses.

>

>A few clarifications on my earlier email:

>

>1) I had a great childhood growing up with BPES. I was a bright,

>loved child who thrived and had every advantage. I don't want to

>scare the young parents who emailed me about their daughters into

>thinking that it's an awful thing. As I said in my first email, BPES

>enhanced my life more than it hindered it. Having something that made

>me different ultimately made me stronger and more self reliant. With

>that said, and I am speaking from my own experience, it was very hard

>to be a teenager and look different. I was teased, I had low self

>esteem for a long time, and it was a long time before I was able to be

>confident enough to start dating. High school was very difficult for

>me socially and I really think it was because I had very low self

>esteem. I think it's important to be honest about these feelings so

>that we can find a way to help young people with this issue.

>

>2) Thanks for the encouraging words from women who were able to get

>pregnant despite having Type 1. I should clarify my earlier posting

>just to say that I am mostly upset (despite being a pediatrician!)

>that I wasn't informed earlier of the urgency to get pregnant. I am

>now 31 and if I now have POF, I will regret not getting pregnant

>earlier (I have been with my husband since we were 21). Mostly I am

>upset at myself for not doing more research myself. Though my doctors

>never told me, that's not their fault. I should have done my own

>research.

>

>3) Someone asked a specific question about the genetic test. I am not

>sure where to get it (there are many posts about this in earlier

>emails), but you can ask your genetics doctor for information on the

>FOXL2 test. Since I have not had it myself, I don't know where to

>obtain it. Perhaps others can help?

>

>4) As for the ethical decision regarding knowingly having a child

>with a genetic disease, I can see every side of the multiple emails I

>have received. As a pediatrician, I have certainly seen hundreds of

>children with much more severe conditions than BPES. Of course it is

>not an awful thing to have it! Let's face it - I have thrived mostly

>because I was 'different' and likely became a doctor because of my

>BPES. But, then there is the emotional side of knowingly passing on

>something that will make your child's life harder in some way.

>Basically, what I was saying in my email is that if I have POF and

>can't get pregnant I will be relieved that I don't have to make that

>decision. That's all.

>

>Thanks for all your supportive emails! No results yet, but they will

>likely be back in the next couple of days.

>

>CBJ

>

_________________________________________________________________

Moda para esta temporada. Ponte al día de todas las tendencias.

http://www.msn.es/Mujer/moda/default.asp

[Guest guest]

Hi CBJ,

I am the father of a seven-years old girl with BPES, and although I don´t

think that BPES is an awful thing I am worried about her future. Your words

have helped me a lot, thank you very much

>From: " cberator " <cbspam@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: blepharophimosis Re: 48hrs to infertility

>Date: Tue, 13 Feb 2007 17:40:03 -0000

>

>Hi again,

>

>Thanks to everyone for their interesting responses.

>

>A few clarifications on my earlier email:

>

>1) I had a great childhood growing up with BPES. I was a bright,

>loved child who thrived and had every advantage. I don't want to

>scare the young parents who emailed me about their daughters into

>thinking that it's an awful thing. As I said in my first email, BPES

>enhanced my life more than it hindered it. Having something that made

>me different ultimately made me stronger and more self reliant. With

>that said, and I am speaking from my own experience, it was very hard

>to be a teenager and look different. I was teased, I had low self

>esteem for a long time, and it was a long time before I was able to be

>confident enough to start dating. High school was very difficult for

>me socially and I really think it was because I had very low self

>esteem. I think it's important to be honest about these feelings so

>that we can find a way to help young people with this issue.

>

>2) Thanks for the encouraging words from women who were able to get

>pregnant despite having Type 1. I should clarify my earlier posting

>just to say that I am mostly upset (despite being a pediatrician!)

>that I wasn't informed earlier of the urgency to get pregnant. I am

>now 31 and if I now have POF, I will regret not getting pregnant

>earlier (I have been with my husband since we were 21). Mostly I am

>upset at myself for not doing more research myself. Though my doctors

>never told me, that's not their fault. I should have done my own

>research.

>

>3) Someone asked a specific question about the genetic test. I am not

>sure where to get it (there are many posts about this in earlier

>emails), but you can ask your genetics doctor for information on the

>FOXL2 test. Since I have not had it myself, I don't know where to

>obtain it. Perhaps others can help?

>

>4) As for the ethical decision regarding knowingly having a child

>with a genetic disease, I can see every side of the multiple emails I

>have received. As a pediatrician, I have certainly seen hundreds of

>children with much more severe conditions than BPES. Of course it is

>not an awful thing to have it! Let's face it - I have thrived mostly

>because I was 'different' and likely became a doctor because of my

>BPES. But, then there is the emotional side of knowingly passing on

>something that will make your child's life harder in some way.

>Basically, what I was saying in my email is that if I have POF and

>can't get pregnant I will be relieved that I don't have to make that

>decision. That's all.

>

>Thanks for all your supportive emails! No results yet, but they will

>likely be back in the next couple of days.

>

>CBJ

>

_________________________________________________________________

Horóscopo, tarot, numerología... Escucha lo que te dicen los astros.

http://astrocentro.msn.es/

[Guest guest]

CBJ,

First, thank you, thank you, thank you, for sharing your thoughts with this group and second thank you to everyone else for the feedback. Honestly I would have no idea where to even begin if it weren't for all of you. I was the first in my family to have BPES and I had my daughter 3 years ago after trying to conceive for two years. Funny thing is that I went to the doctor's office for a fertility treatment consult (i.e. Clomid) and I walked out of the doctor's office having found out that I was pregnant - I was shocked!

Anyway, I haven't been able to get pregnant since and I didn't even know that I had a genetic syndrome until my daughter was born and I realized that I had passed my "eyes" along to her. The night I got home from the hospital, after having my daughter, I searched around on the internet and found out about BPES.

I think I would feel differently about having children (or rather the inability to have a child) if I didn't already have my daughter. The fact that I was able to have at least one child biologically, BPES and all, is something I can't describe. She is such a love. However, I can say that knowing that I am the reason she has BPES and that she is already getting teased by the neighborhood kids because of the syndrome I passed to her is indeed painful. But if I had passed along some other cosmetic trait I would probably feel the same. The part of the syndrome that isn't cosmetic and does make me sad is that she may struggle to get pregnant when she is older.

However, I will not be defined by BPES and my family won't either so we are adopting a baby!!! I feel for our family it is the best decision and we cannot wait to meet the new little one. We are still in the beginning stages of the adoption process but when I think about how it will make Paige feel when she is older to have an adopted sibling (or siblings) it may make her realize that her family doesn't have to be biological to be a family. Like I said, it is the right decision for our family and we are thrilled.

One piece of information that I read that was encouraging is that POF doesn't necessarily mean that you will not ever be able to get pregnant as it is not the same exact thing as menopause. Click the following link for more information: http://www.nichd.nih.gov/health/topics/Premature_Ovarian_Failure.cfm

Thanks again for everyone's remarks. I am truly grateful for this group.

North Carolina, USA

blepharophimosis Re: 48hrs to infertility

Hi all,I just wanted to give you an update on our status with the lab results. My FSH is indeed elevated and it looks like we will pursue egg donor. Thanks for all your support on this journey this week. Though my husband has been very supportive, there is nothing like having the support of women who understand what I am going through.I will continue to post as we begin the process. I am hoping that others who live in the US may benefit from some of the details regarding services, complications, etc. that we face.Thanks again,CBJ

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